Peer advocates supporting older people affected by cancer

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Today we’re delighted to reproduce a personal blog post by Roger Newman, a great friend and supporter of OPAAL. It was first published yesterday on Roger’s own blog site:

CHAPTER 1

You know how it is when you’re sitting in the beautifully warm sunshine of an Atlantic island, and at the end of December too! Your mind plays its usual tricks and your past, present and future all move around your brain inconsequentionally. People, seemingly long forgotten, suddenly appear; events nag their way into the memory producing a cocktail of smiles, feelings of sadness and guilt; and coupled with it all is that priceless feeling of well being . The sun’s rays do their trick and you feel so relaxed as you smooth your body blending together its mixture of sun tan oil and sweat. It has been like that for 10 years now and I happily tell myself that I am lucky, so, so lucky to be here on the island, and may it always be so.

This afternoon as I rub my chest and gently tweek my nipples, on my right side I feel something unusual. Just a small piece of a flower blown off a shrub by the wind, no doubt. I close my eyes and continue with the serendipity. A minute goes by and I brush myself but feel it again. It is different, and this time, there is no doubt – it is real. There it is, beneath my right nipple, something distinct, hard and not moving.

I remembered the same feeling on a November day some 18 years before. I had been listening to a radio programme broadcast during breast cancer awareness week. ‘Men get it too’ the announcer said. I felt myself then, and sure enough, there it was, a small lump. Panic! Total fear! But actually, after diagnosis, all was well. It was a fatty lump and was removed, and I never heard about it again afterwards. This time, however, there was something different about it.

CHAPTER 2

On return home a visit to a consultant was arranged. He examined me and told me that he felt it could simply be the residue of my body’s reaction to some medication I was taking, but it was best to do some tests.

From now on my experience of diagnosis took me into a new world, and I had to get used to the fact that it was a world which was not a man’s world. As a gay man I had not previously felt what might be called a typical heterosexual gender divide, it had not previously been an issue but now, to my surprise, it did. Even the language I used about my body took on what I would have called a feminine aspect. What I had called my ‘chest’ now was called my ‘breast’. In the body imaging department I felt curiously out of place as I waited for my mammogram. The nurse taking the image clearly wasn’t experienced enough to cope either and she had difficulty suitably arranging a man’s body, whose nipples may have been slightly out of the ordinary, but whose breast hardly fitted a machine which was normally used to photographing something much more pendulous and flexible.

The resulting mammogram was insufficient and an ultra sound was called for, but that didn’t show much either, and a biopsy was next on the list. So with just a few bodily bits missing I prepared for another visit to the consultant. There we sat, my partner and me, two men, in a waiting room of women – a brave new world.

In he came, accompanied by a nurse. Smiles and handshakes. None of this, ‘how are you?’ business, which later I came to react to from others, quite a bit. Instead we went straight into it. ‘I thought you had the consequence of medication you were taking, but the biopsy has told me differently and I’m sorry to tell you that its breast cancer.’

‘What????’ ‘For **** sake! I, me, doesn’t get potentially terminal illnesses! I’m here on this earth to be by the side of those who have things like that. I’m the buddy of the man with AIDS. I’m the friend who stands with the carers of those with dementia. I’m the one who conducts the funerals of those who didn’t make it. BUT I am not the one who gets the finger!!!! Hasn’t god ordained it to be like that?

Worse news was to come. A mastectomy would be necessary. Perhaps further surgery to remove lymph glands. Then perhaps radiotherapy, chemotherapy and god knows what else. Partner and I look at each other, unable to mouth what we are feeling, but at least we are together in our grim silence.

Nigel and Roger

CHAPTER 3

How on earth do single people; those without partners; those alone. How do they deal with that news? How do you focus, and even move forward following such news. It’s good having someone else there with you, better than nothing, but there comes a point when you are left alone, alone to cope with such challenging news. Your friend has their own home, their own life to lead; they cant stay with you for ever. How do you deal with the solitude after they have left, when the sympathetic phone calls haven’t helped, when you wake in the middle of the night and the horrors about your future hit you.

I immediately thought of my friend David who had lived with liver cancer for well over a year. He had not lacked visitors or phone calls, but who as I now realised, nevertheless, had much more time alone to cope with his condition after his visitors had gone.

Look, folks! There is an LGBT issue here. We are many – more of us in the 45+ bracket than in the 15 – 44 bracket. We are more than likely to be living alone. Perhaps a third of us will experience cancer. Many of us will die from it. Where are the mentors, the advocates, the befrienders, the social workers and nurses, who understand our distinctiveness, even our uniqueness, and can be there by our side to see us through. In the night watches, when I awoke and considered my position, I gave thanks that I had someone I could say ‘cuddle me’ to, and I thought of those others within our LGBT community who have to face all this alone because we have not mobilised our forces/resources to serve their needs.

CHAPTER 4

I’ve always been different and so not surprisingly my cancer would have to be different too; wouldn’t it! There are only about 300 men per year who get it and I expected that this would mean being left without support, but, hooray, I was wrong. Our first meeting with the breast cancer nurse was accompanied by a superb and informative booklet on breast cancer for men and I soon gladly came to realised that I was not being treated as an honorary woman, with a women’s condition, but as a man who just happened to be amongst a very small but increasing number of other men who are succumbing to the same condition as thousands of women.

That is not to say that there are not psychological issues which may be peculiar to men . I was told that some men have real problems coping with the sheer fact of their different cancer. Perhaps even some might wish they had prostate cancer rather than breast cancer; they at least would have a ‘man’s cancer’. I noticed even within myself that when I told people I left a short gap between the ‘I have’ and the ‘breast cancer’ part of my speech. Perhaps even I felt something not quite right about having it. I was shocked after surgery by how unwilling I was to look at my new self in the mirror, and, when I eventually did it, how upset I was by the sight.

I meet people who still do not know that men can get it too, and I suspect that some might even feel that I had done something wrong, like smoking, to get it. I would love to meet other men in the same situation, but so far, I have found none. Perhaps the enormity of their burden has led them to go to ground. I wonder then if there are any other gay men with the same condition and wonder if I could even be only one in this country.

CONCLUSION

And so it has gone on. The surgery is complete and we (thank god its a ‘we’) have decided on the treatment which is best for us in our situation. From now on, every day will be a bonus day but these days will not be like the other days before the diagnosis. I’m still discovering how you think positively about the future most of the time; how you make a continuously proactive response to living ; AND how you confidently take your place within the male gay community with only one nipple!!!!!!! All things are possible, eh?

In today’s post Roger Newman explains his feelings around being a gay man with cancer:

Its over 40 years since I took my first major steps in ‘coming out’ as a gay man. Not for me the carefully staged video explaining to adoring fans that I was dating another man and nor for me the consequent letters of congratulation arising from it. No this was and, still lingers in the memory as, a major event accompanied by not a little trauma. In the space of just a few days I stood before distraught parents, an incredulous spouse, and unbelieving fellow workers, telling all of them something which obviously seemed to them, at the time, as being not far from the announcement of the imminent end of the world. For me I feared that it might indeed mean the end of my world.

The years have considerably numbed that feeling. Well, at least that’s what I thought had happened until just a few months ago when I was diagnosed with breast cancer and faced two bouts of surgery, with stays in hospital. You probably don’t see any link so far in the story so let me explain.

My ‘coming out’, like that of most LGBT people of my age was always going to be a selective process and was accompanied by the building of defensive walls around my life, just in case I might find myself in situations where being known as being gay might be a threat to my security. I had never felt that I needed to tell everyone but, once in a settled situation, I didn’t need to deny it either. All those who mattered to me knew the facts and when I felt safe enough, in a professional and less personal situation, it didn’t require much courage to admit it there as well.

The days following my breast cancer diagnosis have signalled a change in those feelings. I have been so fortunate to have a loving husband with me when all this kicked off but I hadn’t expected that now would begin a Stage Two of my coming out. I had never envisaged that there might even be something called ‘Stage One’.

To begin with I felt it necessary now to say to those dealing with my cancer care that nothing short of proactive acceptance of me and my sexuality, and of our relationship, was what we both wanted and I was clear what that acceptance might entail. It mattered to me that when the lovely cancer nurse phoned she began by asking if it was Nigel or Roger she was speaking to, an approach so much more acceptable than simply asking ‘Can I speak to Mr. Newman, please’. For us that was a sign of what we would call proactive acceptance.

When after my mastectomy operation, and told that I was being moved into another ward, when I asked that my partner be informed, and told that yes, SHE would be told, I felt I had to make it clear that such mistakes should never need to happen, since it should be basic in service providers training that a person’s sexual orientation should not be presumed. Having a proactive approach to inclusion means that if 5% of the adult population is LGBT, and if in one day you are dealing with, perhaps 20 clients, then one must assume that at least 1 of them might be LGB or T. In that hospital ward I was that 1 in 20; they got it wrong and it mattered to me.

Nigel and Roger

More significantly, however, my stays in hospital have had a totally unexpected effect. To be honest, I have gone back into the closet, when there!!! I had thought that those days were long gone, but now here they were, alive, kicking and frightening. I was appalled to find myself feeling that I was in a threatening environment. The conversations, times of visiting, and the general atmosphere, were so different from the gay culture, which I now realise had come to dominate the way I lived. So now I felt completely at sea and needing to be careful about what I said. I was anxious about the personal details I surrendered. I hardly dared mention a partner and I even found myself begging him not to kiss me when he visited me. His response, as expected, was ‘bollocks to ‘em, I love you’, but on his visits I could see the eyes taking it all in; sorting and codifying the resulting information. I found myself telling him that it was OK for him because he could take our lifestyle back home with him whereas I was left to deal with the consequences. I was profoundly disturbed by having these feelings and I felt guilty about them, but the fact was that there I felt and believed myself to be different. I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me. Just someone with a ‘Me Too’ badge on them, would have helped.

So that’s where we are at in this stage of my cancer journey; always hoping that proactive responses to us and our orientation will enable creative engagement to take place; knowing that there will now be a more regular need to ‘come out’ to others as the chain of service provision progresses and with the additional fear that someone will respond in a less than satisfactory manner; and being so very grateful that, unlike the majority of LGBT people of my age group, I am not alone in facing the challenges of my condition. More of that last point perhaps in another blog.

You can follow Roger on Twitter @RogerNewman6 and read his personal blog here

Cancer support services are perceived to be patchy or even inaccessible when the person affected by cancer is also Lesbian, Gay, Bi-sexual and Transgender (LGBT). There is a lack of solid evidence in relation to this area of need and an absence of information regarding effective approaches to service provision. With a view to improving this situation this project seeks to redress this by speaking directly to people from these groups and undertaking an in-depth assessment of current service “fit”. Recommendations will be made for service redesign based on the experiences recorded across Staffordshire, including Stoke on Trent. It is expected that the recommendations made will influence services nationally and may form the basis of a much broader review of services.

Jo Coulson

Scoping aims are to find out:

What are LGBT people’s experiences of cancer treatment and support locally?

What factors facilitate/inhibit open discussions between clinicians and LGBT patients?

How well educated are local health professionals about LGBT issues (both clinical and personal – do doctors make assumptions)?

For advocates, human rights are a shared language of duty and respect that can be used to achieve good outcomes out of court. The Human Rights Act means that public authorities have a legal obligation to respect human rights when they make any decisions involving a person’s life. Advocates can raise human rights in discussion with a person or public authority and they can use human rights to give older people a voice in decisions about their own life, even if they may not have capacity for that particular issue.

BIHR have worked with older people and advocates to help them understand and benefit from human rights. In our Guide for Older People we encourage older people to know how to utilise their human rights by recognising situations where rights may be at risk and how to seek help. Through our partnership work, those we work with have used the Human Rights Act to achieve real outcomes.

Human rights advocacy in real life: Using the Human Rights Act to challenge blanket use of tilt-back chairs in a nursing home.

Laura is a consultant who works with older people, and having worked with BIHR is a keen proponent of human rights in NHS services. She was visiting a nursing home in London when she saw several residents were effectively trapped in special ‘tilt-back’ chairs. The chairs were being used because they stopped people in the home from trying to get up, falling and hurting themselves.

Sadly, this meant many older people who could walk weren’t able to get up and out of the chairs. Instead they had to wait for staff to come and get them out of the chairs so they could go to the toilet or go and get something to eat. The residents at the home who were previously very independent could no longer choose what they wanted to do with their days, and because they couldn’t walk around very often, they started to find walking very difficult.

Laura was concerned this practice in the home raised human rights issues. She talked to the residents who were kept in the chairs, who told her they felt their dignity and independence was being taken away from them. Laura realised that by not allowing the residents who could walk the freedom to move around, their dignity and autonomy, protected by the right to private life in the Human Rights Act (Article 8) was being risked. She was also concerned that for some of the residents, it might even be inhuman or degrading treatment, which is never allowed under the Human Rights Act (Article 3). Laura raised her concerns with the staff and using human rights language they were able to see that treating all of the residents the same in order to protect the few who needed the tilt-back chairs was not appropriate. Residents who could walk were no longer placed in the tilt back chairs and staff encouraged them to start using their walking skills again.

BIHR’s project work with older people and advocates

Through partnership projects with older people’s groups, including local branches of Age UK, we have worked to empower older people through training around how to use the language of human rights in their daily lives and to influence service delivery and policy.

Through this work one group of older people in Derby made a DVD on the issues facing older members of the lesbian, gay, bisexual and transgender (LGBT) community who live in residential care, which received extremely positive feedback. (Watch the film here). Another group looked at the lack of public toilets and transport links, which helped them collaborate with other groups affected by this issue, such as disabled people and mothers with young children. They raised awareness about this issue and engaged with local officials.

If you’d like to find out more about our work with older people, or to find out more about how advocates can use human rights, check out our resources aimed at advocates and older people. All BIHR’s resources are freely available here.

I am absolutely thrilled to welcome Jonathan Tobutt to the OPAAL(UK) Board of Trustees. Jonathan is a very welcome addition to our team as he brings a wealth of knowledge and experience which he describes himself below.

Hello all, my name is Jonathan Tobutt. I have recently joined the OPAAL (UK) board of trustees. This is a new venture for me and I’m looking forward to working with the team. Born in London in 1955 – I now live in West Yorkshire – I trained as a classical musician before retiring from playing professionally full time in 1982 to pursue a career in education.

I have worked on a variety of interdisciplinary educational disciplines including medical training, probationary welfare and teaching basic literacy and numeracy skills for the Criminal Justice System. I have been a carer since 2005 when my partner was diagnosed with colorectal cancer. He has lived with a colostomy from 2010 and palliative status since 2011. He also has a nephrostomy. As with many other people my role as carer was the result of circumstances. Apart from the usual domestic nursing, I had little experience of caring full time, so the shock of our situation, both emotional and practical, was painful. As a carer I have run the gauntlet of being ignored, tolerated, patronised and to my latest incarnation of near sainthood. Having encountered bullying and insensitivity as well as touching humanity, it never ceases to amaze me that nuanced communication across the breadth of the medical world is so lacking a skill. For anyone in a supporting role or living with cancer we need a more holistic approach rather than the present emphasis on the biomedical model with honest discussions of outcome of any cancer procedure reflecting an expected lived experience. There are wonderful examples of such practices, but countrywide these ideals remain the exception. I am interested in how the older LGBT generations experience and cope with cancer and how the present model of care can be further developed to foster greater understanding of need.
Contact me via twitter jonathan@oboejonny

Jim Peters blogs at Rant from the Suburbs after reading this piece he had published with Macmillan in April we contacted Jim who kindly gave permission for us to reblog this post from his blog.

Jim Peters from Rant From the Suburbs

I just read an entry from Nick Wright on the Prostate Cancer UK blog entitled “Life after prostate cancer – it’s about more than surviving”, which, for me, was very inspiring. I liked the piece. I even clicked on “Like”. I’d recommend anybody interested in prostate cancer read it. But, there’s always a “but”.

I have often been inspired and encouraged by things I’ve read and heard over the last two years since first having the word “cancer” mentioned to me by my GP. On almost every occasion that inspiration has soon dissipated when the realisation dawns that, once again, what’s being spoken or written about is done without any thought that people like me might be affected by this disease.

The assumption always made is that a man with prostate cancer (a) must have a partner and (b) that partner must be a wife. Why?

Nick Wright’s piece was no exception. For example “The wives of the men on the programme played a key part in its success. And it soon became clear that they were having a tough time too”.

Nick, if you are reading this, my male partner of 30 years is having a hard time. He’s supported me all the way and is having to cope with the big changes in our life himself. He would also benefit from the great support you mention (and it is great support by the sounds of it). Language can be very inclusive and positive. It can also be very exclusive and negative.

As advised in the last paragraph of Nick’s blog entry, I did contact Prostate Cancer UK a few months back to see if there were any plans to start some sort of a support group in the London region for gay and bisexual men affected by prostate cancer. The reply amounted to “there’s no demand”. Apparently, there is demand in Birmingham where Prostate Cancer UK were recently looking for a support worker for a group it was setting up there.

I’m no expert on demographics, but I reckon it’d be a fair bet to say the London region has a larger population of gay and bisexual men than Birmingham and that it would follow that there’d be a larger number of us likely to be affected by prostate cancer in London than in Birmingham. Of course, it’s possible the person at PCUK who responded to my enquiry didn’t have a clue and genuinely thought London doesn’t have a large gay population. A bit like the old days when it was believed you’d only find a “homosexual” if there was a theatre in the town. For info, London has lots of theatres.

It has also provided some help to at least one of the other two groups that have started in the UK in the last year, in addition to the one mentioned in Birmingham. A year ago there were no groups in this country for gay and bisexual men affected by prostate cancer, today there are three – the other two being in Manchester (Out With Prostate Cancer) and Greenwich in South-East London (Metro Walnut).

Our NHS still has a long way to go, too, when it comes to understanding that not all men with prostate cancer are straight. I’ve met some people in the NHS who have been instantly supportive when finding out I’m not straight. Unfortunately they’re still a minority. One Consultant genuinely wanted to know how prostate cancer was different (not worse) for a man who isn’t straight and was very interested when I explained. He is one of the people who is now attempting to start a support network in a region very near London for gay and bisexual men affected by all forms of cancer. At the other end of the spectrum I’ve had to repeatedly explain and repeat several times to the same people that “no, my wife will not be picking me up after treatment, my male partner will”. Assumptions being made are bad enough but when the same people insist on referring to my non existent wife it becomes very trying.

I didn’t used to bang the gay drum, well not as loudly anyway, but when you’re affected by something as major as cancer you tend to ask yourself why you’re still putting up with being ignored and excluded by organisations that are supposed to treat us all fairly and with dignity and respect. Having asked myself I decided I would no longer just put up with it. That’s one reason why I’ve written this.

Information on the three groups that currently exist in the UK for gay and bisexual men affected by prostate cancer can be found at the end of Prostate Cancer UK’s Prostate facts for gay and bisexual men.

As part of the national focus of Cancer, Older People and Advocacy, programme manager the Older People’s Advocacy Alliance (OPAAL) is looking at how successfully we support minority sections of the older population.

We’ve got to start somewhere so we’re developing delivery partners’ knowledge and understanding of supporting older people who identify as Lesbian, Gay, Bisexual or Trans (LGBT). Already partners have attended training sessions run by Opening Doors London and those who attended are cascading their knowledge locally. In addition, delivery partners are working with LGBT organisations in their own localities to develop and expand their local knowledge.

Most of us take for granted that our partners and families will be fully involved in meetings and discussions following a cancer diagnosis. What if it’s not made easy for the older LGBT person to identify their significant other whom they want involved in the same way? A diagnosis is a difficult enough thing to face without having to deal with other people’s assumptions or indeed their discriminatory views and/or behaviour. That’s why it’s really important not only that we raise awareness but also why we need to recruit older LGBT people who have been affected by cancer to be trained as peer advocates.

At OPAAL we’re really lucky to have Trustee Roger Newman helping us understand how we as a national membership organisation can best support our members develop best practice.

Roger Newman

You can follow Roger’s personal blog where he publishes posts from his viewpoint as an older gay man. It’s truly illuminating and very informative. Recently Roger and his partner Nigel featured in a Guardian article about love in later life. The article has two stories, Roger and Nigel’s and Leslie and Barbara’s. Both stories are heart warming and can be found here.

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We've published "Every Step of the Way": 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer and "Facing Cancer Together": demonstrating the power of independent advocacy.

You can find and download pdf's via the "About Us" page. You can click on "About Us" on the top right of this page. Alternatively you can order hard copies free from Macmillan Cancer Support by following the same link as above.

We've now also published "Time: our gift to you", 19 volunteers' stories from some of our peer advocates and cancer champions. It can also be downloaded via the "About Us" page on the top right of this page.